Friday, January 18, 2013

Getting the results of a genetic test can be a bit like opening Pandora's box. You might learn something useful or interesting, or you might learn that you're likely to develop an incurable disease later on in life.

There's a federal law that's supposed to protect people from having their own genes used against them, the Genetic Information Nondiscrimination Act, or GINA. Under GINA, it's illegal for an employer to fire someone based on his genes, and it's illegal for health insurers to raise rates or to deny coverage because of someone's genetic code.

But the law has a loophole: It only applies to health insurance. It doesn't say anything about companies that sell life insurance, disability insurance or long-term-care insurance.

"GINA was a fabulous accomplishment," says Robert Green, a researcher in the genetics department at Harvard Medical School. "It was long in coming and much needed. But I think that it was not perfect."

Green oversaw a study that examined how people react after they learn they have ApoE4, a gene associated with Alzheimer's. He found that people who discover they have the gene are five times more likely than the average person to go out and buy long-term-care insurance.

"It would be a natural thing that people might consider if they find out that they are at an increased risk for Alzheimer's disease. This is a logical outcome to getting genetic-risk information," Green says.

But when people go make that "logical" decision, there's nothing stopping the insurance companies from demanding to see the results of their genetic test. In fact, a long-term-care company could legally require someone to take a genetic test before selling him a policy.

Green says it's especially ironic that GINA does not apply to long-term-care insurance policies, since they cover the costs of nursing homes, assisted living facilities, home health aides and other things that people with Alzheimer's disease often need to use.

Rep. Louise Slaughter, a Democrat from western New York, introduced GINA in the House back in 2007. She says she fought hard for the law because she didn't think it was fair that a few wayward strands of DNA could make you essentially uninsurable.

"There were countless people in this country who were not eligible for insurance at all, simply by the way they were born," Slaughter says.

But she knows the law still has gaps that need to be closed. "And we plan to do that," she says.

If that happens, the insurance industry will have a thing or two to say about it.

Insurance works best when lots of people purchase policies but only a few actually need to use them. Selling these kinds of policies suddenly becomes unsustainable if genetic testing becomes widespread, and most — or even all — of the people who buy long-term-care policies do so knowing they're probably going to develop Alzheimer's sometime down the road.

When Green talked about his study to a room full of insurance executives a few years ago, he found out just how frightened the industry is of this scenario.

"These very mild-mannered people in the audience got very, very heated," he says. "They were standing up and saying, 'This kind of situation is going to put us out of business.' "

A spokesman with the company Genworth, the largest seller of long-term-care policies in the U.S., said in an email to NPR that it doesn't want to lose its ability to "utilize all information." Genworth isn't restricted by the law now, and it doesn't want that to change.

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Transcript

ROBERT SIEGEL, HOST:

Getting the results of a genetic test can be like opening Pandora's box. You might learn something useful or interesting, or you might learn that you're likely to develop an incurable disease. The Genetic Information Non-discrimination Act, or GINA, is meant to protect people from having that kind of information used against them. Under GINA, it's illegal for an employer to fire someone based on their genetic code, and for health insurers to raise rates or to deny coverage because of it. But the law has a loophole.

And as David Schultz reports, it could have a big effect on people who want to buy other kinds of insurance.

DAVID SCHULTZ, BYLINE: A couple years ago, Tanya Zucconi enrolled in a scientific study that involved taking a genetic test to see if she has a gene that dramatically raises the risk of developing Alzheimer's disease. She did it for two reasons. One, her father was a scientist.

TANYA ZUCCONI: And as someone who was always raised to respect science and to participate and to help out when you can, it just made sense to me.

SCHULTZ: And two, her mother had just been diagnosed with Alzheimer's. So, Zucconi wanted to find out what the odds were that she would get the disease, too.

Now, some people don't want to get their genes tested. They worry that what they'll find out would be too difficult to handle or that the test will make it harder to buy insurance. After all, companies might be reluctant to insure someone who knew they would probably develop Alzheimer's.

But Tanya says the doctors who gave her the test told her not to worry about that.

ZUCCONI: I did talk about that, both with the folks who ran the project and with other people around me - family and friends. And I was assured that there is a federal law that would protect against any discrimination.

SCHULTZ: That federal law prohibiting discrimination, known as GINA, was passed by Congress and signed by President Bush in 2008. And Tanya's only partially correct. GINA prevents some insurance companies from discriminating based on genetic information, but the law only applies to health insurance. Companies that sell life insurance, disability insurance, long-term care insurance, the law doesn't say anything about them.

ROBERT GREEN: I do think this is a loophole in GINA.

SCHULTZ: Robert Green is a researcher in the genetics department at Harvard Medical School. He was the leader of the study that Tanya participated in.

GREEN: GINA was a fabulous accomplishment. It was long in coming and much needed. But I think that it was not perfect.

SCHULTZ: Green says it's especially ironic that this law does not apply to long-term care insurance policies, since they cover the costs of nursing homes, assisted living facilities, home health aides, and other things that people suffering from Alzheimer's often need to use.

Green's study examined how people react after they learn they have this gene associated with Alzheimer's, a gene known as ApoE4. He found that people who discover they have the gene are five times more likely than the average person to go out and buy long-term care insurance.

GREEN: So it would be a natural thing that people might consider if they find out they are at an increased risk for Alzheimer's disease. This is a logical outcome to getting genetic risk information.

SCHULTZ: And when they go make that logical decision there's nothing stopping the insurance companies from demanding to see the results of their genetic test. Actually, a long-term care company could require someone to take a genetic test before selling them a policy - that's totally legal.

Congresswoman Louise Slaughter, a Democrat from western New York, introduced GINA in the House back in 2007. She says she fought hard for the law because she didn't think it was fair that a few wayward strands of DNA could make you essentially uninsurable.

REPRESENTATIVE LOUISE SLAUGHTER: There are countless people in this country who were not eligible for insurance at all, simply by the way they were born.

SCHULTZ: But she acknowledges the law's got a few gaps.

SLAUGHTER: We've been talking about this since we passed the last one; that we would need to upgrade it. And we plan to do that.

SCHULTZ: If they do, the insurance industry might have a thing or two to say about it. Insurance works best when lots of people purchase policies but only a few actually need to use them. If genetic testing becomes widespread and most, or even all, of the people who buy long-term care policies do so knowing they're probably going to develop Alzheimer's sometime down the road, selling these kinds of policies suddenly becomes unsustainable.

When Robert Green talked about his study to a room full of insurance executives a few years ago, he found out just how frightened the insurance industry is of this scenario.

GREEN: And these very mild mannered people in the audience got very, very heated. They were standing up and saying, this kind of situation is going to put us out of business.

SCHULTZ: A spokesman with the company Genworth, the largest seller of long-term care policies in the U.S., said in an email to NPR that it doesn't want to lose its ability to, quote, "utilize all information." Genworth isn't restricted by the law now and it doesn't want that to change.

For NPR News, I'm David Schultz. Transcript provided by NPR, Copyright National Public Radio.